Hemiplegic migraine : I am paralyzed with my migraine!
Here is a story:
Joan was used to her visual auras. She had them since she was a child, seeing squiggly lines. Now at 27 years old, she was using triptans, had learned about her triggers, and was functioning well. But last week, her aura was followed by tingling in her arm, then leg. And then…she could not move anymore. She stumbled to the sofa and panicked. The ambulance brought her to the ED, and she was treated like she had a stroke. The next day, the symptoms had completely cleared and she was told by the stroke team that this was «maybe hemiplegic migraine» and that she should not use triptans anymore. Joan had a ton of questions but was told that she would see a migraine specialist. Then she learned it would be in a year!
What are auras?
Auras are neurological symptoms (vision, sensation, speech) caused by an abnormal electrical wave on the surface of the brain. The symptoms depend on where the wave goes. Auras have a strong genetic basis.
What is hemiplegic migraine?

Hemiplegic means «paralyzed on one side». We use this term for people who develop weakness as part of their auras. Sometimes, people report «heaviness» as part of sensory auras, but no true weakness. It’s not always easy to clarify if true motor weakness is present. Testing the movement and strength of the affected limb during an attack can be helpful. Sometimes, the paralysis is very clear.
Is an aura different from a seizure?
Yes. Both are caused by abnormal electrical activity of the brain, but they are different. The electrical wave of the aura is slower and is usually not seen on EEG. Auras also come with a typical sequence of events and rarely involve loss of consciousness or abnormal movements that are typical in epilepsy.
Is hemiplegic migraine always a genetic disease?
There are three genes associated with hemiplegic migraine. They are named FHM1, FHM2 and FHM3. These genes influence how neurons function.
Up to 40% of people with hemiplegic migraine symptoms do not have these abnormal genes. Some people have members of their families affected (familial cases), other don’t (sporadic cases). If the gene testing is negative, it is still possible to have hemiplegic migraine. Research might discover new genes in the future.
Why do those genes cause auras with weakness?
These gene mutation change the way that neurons work. They become very excitable and prone to produce auras. Usually auras are mostly visual, because the electrical wave remains in the visual part of the brain. If the electrical mechanisms become «stronger», the electrical wave can reach the part of the brain that manages movement, and cause weakness.
Are there other symptoms associated with hemiplegic migraines?
Some hemiplegic attacks can be very severe. The brain can go under such an electrical and chemical storm that the person might have fever, seizures, confusion and even become comatose and require ICU management. Of course, in every case of such an attack there should be a complete medical workup done.
NEVER assume that a neurological symptom is an aura unless it has happened multiple times and has been investigated and diagnosed.
What about «confusional migraine»? Is it the same thing?
The term «confusional migraine» is not an official one, but many experts believe aura waves might go to the zones of the brain that manage language, memory and focus.That could explain symptoms of confusion. More research is needed in this area.
What should I do if I have auras with weakness?
Any person with hemiplegic migraine should be evaluated in Neurology, and ideally by a headache specialist. Specific tests need to be ordered, and treatments must be carefully adjusted. If you are using a headache diary, record your different types of migraines and auras.
Can the hemiplegic aura transform into a stroke?
Stroke after an aura (migrainous infarction) is reported, but extremely rare. Usually hemiplegic auras will resolve, but are sometimes longer than typical auras. Durations of many hours and even days have been reported.
Can I use triptans if I have hemiplegic migraine?
Physicians are instructed not to prescribe triptans to people with hemiplegic migraine. The idea is that triptans constrict blood vessels and that, during a severe aura, blood vessels are already constricted. Therefore, triptans could cause a stroke. A serious discussion with a headache specialist is needed to find the best treatment approach.
Are there better preventives for hemiplegic migraine?
Because hemiplegic migraine is very rare, we do not have studies on this group of migraine in particular and these patients are often excluded from pharmaceutical studies.
It is thought that medications that could be more effective for hemiplegic migraine prevention include magnesium, calcium channel blockers, topiramate, lamotrigine and acetazolamide. Botox has been effective in some patients.
Conclusion: the diagnosis and management of hemiplegic migraine requires a high level of expertise. If you think that you suffer from this condition, you should be evaluated by a headache specialist.
REFERENCES
Russell MB, Ducros A. Sporadic and familial hemiplegic migraine: pathophysiological mechanisms, clinical characteristics, diagnosis, and management. Lancet Neurol. 2011;10(5):457-70.
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My new Headache Specialist (UofA Hospital) has directed me to this website. The hemiplegia migraine clearly describes my experiences of the past 10 most. and currently. Have been to ER 6x with scary symptoms of hemiplegia, treated for stroke. My Dr. says it is extremely rare and offers me botox but doesn’t seem to grasp how disabling this is for me. What can I do?
Dear Lynn,
Your specialist is right, hemiplegic migraine is very rare. We know some genes that cause it, but in some cases the gene testing is negative and then patient and doctor are left wondering what is going on. MRI is usually normal. Genetic testing is costly and not all teams have access to it. Some teams have decided not to do gene testing, as it does not really impact treatment. You’ll be glad to know that Botox can be beneficial for hemiplegic migraine, so it sounds like a good recommendation. If you feel like your specialist does not grasp the full scope of your symptoms, maybe bring that up. Be aware that many headache specialists are completely overloaded and do not have enough time in their booked schedule to go in the depth they would need for each patient. Also remember that specialists see many patients, and they are professionals, so they manage situations rationally, even if they are aware of your distress. The most important thing is to maintain a good communication with your treating physician. We still have a lot to learn about hemiplegic migraine. I wish that you find treatments that help. Dr Leroux, Migraine Canada
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Are there any clinical trials going on in Canada, US or anywhere else for Hemiplegic Migraine? What if we want to try different treatments under a clinical environment?
Hello. My daughter [17] had a medullablastoma removed from her right cerebellum in 2017. In 2019 she began to experience the symptoms of hemiplegic migraine – aura, difficulty speaking, numbness in her right hand, arm and shoulder, followed by nausea and severe headache on the left/front of her head. The episodes have been scary for her and us… but her oncology team don’t seem too worried. Are there other instances of these types of migraines post-brain surgery? Is there something we can do to help her? thank you.
I’ve had hemiplegic margarine’s since high school. No one understands how debilitating these are. They leave me with weeks of confusion, dizziness and aura. I wish there was more research on them to help people like myself and others. I feel like I’m alone and the doctors seem to be so unsure of what is going on. I can’t find my trigger and so i get them whenever. I loose money because I often cant work, can’t look at technology because it gives me aura, i’m at a loose.
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Hello,
My adult son is suspected to be experiencing hemiplegic migraines. Unfortunately, he hasn’t been able to see a neurologist or have any imaging done yet as he is in an area being highly impacted by this fourth wave of COVID. He isn’t able to work. He had to call an ambulance once, he couldn’t speak to give them his address. They didn’t have room to keep him in the hospital and do imaging and tests – just an IV and send him home with a prescription to use sumatriptan as a rescue med and ask his GP to refer him to a neurologist. This was almost a month ago. These headaches are so disabling and scary. I can’t believe he has to wait for someone to be seen. Is it safe for him to use sumatriptan? He went to a walk in clinic when the headaches kept happening and the dr added a calcium channel blocker. He had a minor concussion a month or so before the headaches started.
Got to love the healthcare system. I am going through this myself. I only got pushed to the top of the neurologist list because my stay at the hospital. If it gets worse, please take him. Along with the weakness, I progressed to left leg seizures and shortness of breath. Everything you are also describing happened to me. I started nurtec. All symptoms faded in less than 24 hours. Almost made me question my sanity.
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